Blowing My Top (If Not My Chai Latte)

Sitting in a coffee shop near my house, interviewing a woman with celiac disease for a newspaper feature, I casually asked her, "and where did you go for education?"

Her answer almost made me spray a mouthful of chai latte across the room.

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"They gave me a list of gluten-free foods," she responded.

Wow. A piece of paper. So the foods were listed in categories. Whoop-de-do. And not all (she found out) were gluten-free.

Dagnabbit, it wasn’t enough! Where was the reassurance? The sympathy? The gluten-free menus from area restaurants? The lists of gluten-free foods at the local grocers? The tips on how to avoid cross-contamination? The easy recipes and menus to get her started? The helpful tips on how to manage meals when you have a full-time job and three small children and can no longer call out for pizza or pick up fried chicken at the deli on your way home?

And, just as—if not more—important, the resource you know will be there when you have questions or are feeling overwhelmed?

This isn’t just about celiac. It’s about the whole blasted attitude of some medical professionals when it comes to caring for the whole person. When I was diagnosed with Type 2 diabetes in 1986, I was handed a piece of paper, too. It didn’t help then, and it doesn’t help now. I’d like to think we’ve progressed in the intervening 20+ years, but apparently we haven’t.

It’s our grandmother’s egg custard when we’re sick. The cherry pie we always had when we went out with a favorite aunt. Mom’s vegetable soup on a wintery day. Turkey and pumpkin pie at Thanksgiving. Challah and chicken soup on the Sabbath table. Cake on your birthday. A grilled cheese sandwich with your tomato soup.

To turn somebody loose with nothing more than a piece of paper after delivering such devastating and life-altering news is, is, is…unkind. (And that’s putting it kindly.) I can assure you that neither that doctor nor his partners will be doing that again: I had a little “discussion” with the clinic’s marketing director.

Am I pissed? You betcha. But I’m also puzzled. I don’t understand where their compassion is, not to mention their brains. Maybe it’s just me, but how you can dispassionately (for that’s how it seems to me) send people off with no map to help guide them through the rest of their lives? Is it all that difficult to refer somebody to the proper educator? Is the money for the education coming out of their own, personal pockets?

And shouldn’t some of this stuff be common sense? I thought doctors were supposed to be intelligent. Somebody here (and, most likely lots of other places) just isn’t thinking. Celiac disease isn’t the only condition where diet is important. Diabetes (as we all know) is, too. And it’s important for people with cystic fibrosis, which not only clogs the lungs, but also obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food (people with this condition need to know how to add lots and lots of calories to their meals).

I’m sure there’s more, but those are the only ones I know of off the top of my head, except maybe for food allergies. (You never know where some of those allergens are hiding!)

As usual, I think it’s a matter of taking matters into your own hands. The problem is, you have to have some idea that there is help to be had. The woman I interviewed had no idea there was help available, or even where to start looking if she’d known it was there. The woman had been getting by with help from friends of friends. She didn’t know, until I told her last Wednesday, that there were professionals in town she could go to. I even gave her a name.

Does anybody out there remember the 1976 film, “Network,” about a fictional TV station and its memorable line “I’m as mad as hell, and I’m not going to take this anymore?”

Perhaps it’s time we rise up en masse and shout out our anger at being treated as automatons expected to blindly follow orders. While a few enlightened health-care professionals understand the importance of self-management education, too many still send people away with nothing more than a piece of paper. It’s time we all demand that we be treated like human beings.

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SSP

oh yeah, I know, Granny…I went to see a new “endo” here in Tucson and her nurse had the GALL to hand me a list of “no no items.” I glanced at it and handed it back to the nurse, “I don’t need this,” I said. “I have been diabetic for over 30 years, and I wear a pump, so no food is verbotten any more,” I added with a smile. “The doctor wants her patients to stay away from these foods. In fact, there are some fruits and cereals you probably eat on a regular basis that she would like you to avoid all together, and of course no sweets or cake or cookies.”

The doctor then comes in and tells me, waving away the 3 ring binder of log records, that I test my blood too much. She wants me to test 4 times a day, ONCE A WEEK, and let her know what my sugar is and SHE will let ME know what adjustments to make

I bit the inside of my mouth REALLY hard, which is not easy for me, as you well know. All I wanted were the friggin’ written prescriptions for my meds so I could get the hell out. Which I got, and never went back. Medical professionals …pffffffftttt

tmana

Here’s the kicker: I was preliminarily diagnosed by a PA (Physician’s Assistant) with both hypertension and diabetes in 2002. He gave me two sheets of paper: one with an old-style ADA 1800-calorie exchange-based diet (before they split out the proteins by fat level) and the clinic’s own 1000-mg-max low-sodium diet. He told me I should look at them as guidelines, since there was probably no way I’d be able to merge the two together and still find anything to eat.

The 1000-mg-max sodium diet included six one-ounce slices of bread. I defy you to go to the grocery store and find an off-the-shelf loaf of normal, yeast-raised-flour bread that comes in under 150 mg sodium per ounce. The artisanal breads — which are supposed to be healthier! — come in at an average of 250 mg sodium per ounce. In short, their own diet sheet set up the patient to fail!!!!!

It took me cycling through three doctors at that clinic to find a reasonable PCP — by which time I’d worked things out myself, based on some good books, some online research, and having spent a good portion of my university years in a living arrangement with a number of what then were considered “health food nuts”. I was never referred to a CDE, either.

What I’ve also learned along the way — what many of us have learned along the way — is that once we figure it out, our paths will cross those of others who need our guidance in figuring things out for themselves, making the correct connections, and finding appropriate professional assistance. I can be PO’d at The System, but still thankful to He Who Maketh Peace to have given me the intelligence to work things out, and for the ability to assist others.

bird

Linda and all the others who take the extra time you dont have to help those confused, lost and not knowing what to THANK YOU. I know there are professionals out there that care and distraught by the lack of care and concern given.

I have been a type 1 for 43 years. I have been through mannnny changes in how to take care of my diabetes. If you think it is hard now try doing meals from a guide of yes and no food on an exchange system. Today you have the label that tells you carbs and sodium and calories. Thank you to those who fought for that. imagin boiling your syringe and needles – no disposables. No blood sugar machines only urine testing.

In the large cities there is a better understanding but that does not mean everyone sees it nor does it mean the smaller cities dont have good providers. You the patient must listen, take what is give and read it. Then you need to write down the questions and get answers from you Dr. or someone in the office. You need to use the internet for what ever you have just to get understanding. You can only hope you get into a Dr. that has a working team.

I have been lucky at most of my choices for health care. But it takes years of learning what to do. At least today there are sites and blogs to help you feel good about what you are doing or where you can look for some help or better understand why you have to do somethings.

My husband was sent home from a dr. with an 1800 calorie diet, pills and see you in 2 weeks. We were leaving town for a weekend. If it hadnt been for my knowledge, my blood monitoring machine and what he learned from me he would have been in trouble. He also learned, trial and error on cutting back on the med for his control. The dr. would say cut the pill in half. then cut it in half again. he responded I am not taking it anymore and my sugars are fine. He is doing great but you need that person or team to guide you.

I was not aware that insurance companies did not pay for diabetic needs and supplies. If you have a plan contact the provider direct and ask what your plan provides and how you can get the correct coverage. Many of the doctors will write letters for the patient but find out where they need to go and make a copies of everything you send and a list of everyone you talk to and when. This is one thing that helps when fighting for YOUR needs.

Ann

Our “health care” system in the U.S. is misnamed. it is really an illness-care system. It is not designed to help people get the services they need to stay healthy — whether they have a chronic disease or not. Rather, the system is design to provide immediate care for a short-term illness that is expected to go away soon. That is why there is not adequate payment for health-promoting services.

There3 is a lot of talk in health care planning about the “chronic care model.” If our financing and delivery of services were reorganized to provide “chronic care,” we would receive the services that people with chronic diseases need. For example, teaching self-management is an integral part of that model of health care delivery. But changing a system as large as the US illness-care system, with its enormous inertia levels and resistance to change, is hard work, and takes time.

acooper

The only patient friendly advice I received on diet was from a diet educator at the University of Texas Southwestern Medical Center. Even then it was a booklet with recipes.

My first PCP told me no more microwave cooking, fruit, sweets, etc. She told me to measure everything. The second PCP sent me to the diet educator. My third PCP gave me a set of dishes that were downsized for diabetics. My fourth, bless him, told me to use common sense and use my monitor to see how what I ate affected my blood sugar. He has, without explaining why, urged me to get better control of my blood sugar and cholesterol. My numbers are pretty good — 5.0 for the Hba1c. It was not until recently that I learned that Type II diabetics should try for 4.5 and even tighter than recommended cholesterol control. Why? So we can live longer with less concern about heart attacks and strokes. I’m not sure how many years this will add to my 67 year old body. Now, to convince Whole Foods to carry some of the ingredients for the recipes that look fairly interesting, if not extremely adventurous.

Bob

AMEN!

Surely doctors can not get emotionally envolved with patients, but being treated with the same sensitivity as a fence post is worse than the diseases we have. I submit that those doctors who don’t recognize our humanity wear a little stamp on their foreheads that says “I Robot.”

ruth618

I saw in CNN last night that a man having a diabetic episode was beaten by a policeman who was fearful that his insulin pump was a bomb or other weapon of mass destruction.

Linda the Pharmacist

I know how frustrated you all feel about the lack of time and information dispensed by your health care providers. The REAL problem is that your insurance companies do not pay any of these people to spend that time and give that service in the way it will help. I spend hours and hours each week teaching my patients how to use their glucometers and insulin pens. I call them weekly after a dosage adjustment to see how they are doing. I intervene when the insurance company requires a prior auth or formulary switch and NO ONE pays me for this. We barely are reimbursed for the cost of the dispensed medication.I offer diabetes education and self-management information at $50.00 per hour and no one can afford to pay it. We have one insurer in the area that encourages their diabetic subscribers to come for education. They pay me $20.00 per 15 minute session (up to 2 per quarter) and waive the co-pays for diabetic testing supplies, medications and labs. Only 50 people out of 250 eligible signed up. This is discouraging. You bloggers are pro-active, but the majority of patients do not want to manage their conditions and many caregivers give up trying.

Calgarydiabetic

Dear Jan.

A bit better here in Communist Canada, although with the $1,000,000,000,000 bailout and other massive government projets (one war, another war and new toys for future wars) WE are wondering if you have become the USSA and you will have to stop making jokes about our Commie health care.

I was entitled to several FREE courses when I developped diabetes and the Stanford: Living with Chronic Conditions for a pittance.

Still the most useful person was the Safeway(yes the food chain and pharmacy) Diabetes person.

The Health region dietitian and I where on different wave lenghts, she was talking muffins and I was talking sauerkraut. I finally walked out saying that I never ate muffins before getting diabetes and do not intend to now.

The nurse that showed me how to inject insulin was very useful.

The blood pressure and cholesterol control courses were a must. I even got many session with a phychologist working in blood pressure and cholesterol control.

The how to measure your blood pressure workshop was also helpful.

I am amazed that in the land of the Govt big bucks the patients with very chronic conditions are dimissed so abrutly.

Airborne Mom

And to think that so many Presidential candidates are so sure they can fix this problem in four years. None have yet.

Jan Chait

Hello Linda the Pharmacist. I read back over my blog and realized I should have said up front that it was not an educator who gave her a piece of paper: It was the gastroenterologist who made the diagnosis. I know a number of very good, and helpful, educators. If not for some wonderful educators in my life, I don’t know where I would be today. But you can’t get to an educator if you don’t know one exists. She did not know they existed because her doctor couldn’t be bothered to take a minute to tell her – or to tell his nurse or the clinic social worker – to refer her to the proper person. I hear your frustration with people who are referred, but don’t show up. I hear that same thing from educators I know. But I think there is a difference between knowing about something and choosing to ignore it than not being given vital information you might no otherwise be aware of: i.e., there are people out there who can help you. I can sympathize with her because the doctor who diagnosed my diabetes didn’t tell me about educators, either. By the time I got to one, nine years later, my A1C was over 17 percent. The doc did not do me any favors.Jan

denise

My previous allergist was that way. After being diagnosed allergic to SOY (yep-soy) he toldme to go homeand throw verything with soy in it away….never bothred to say the other namesit goes by or anything…geesh….thank goodness for the internet!

Barb

In January of 2008 I was told by my doctors associate that I was diabetic, type 2. Only one I could get in with when I had a bladder infection, the test from it is how they caught the high sugar. I was then told to start a 1800 diabetic calorie diet and to come back to have my A1c done. When I asked for information on how to control my diabetes I was handed a paper with a weeks worth of guide line menu.Thank god I have a friend who is a nurse and is friends with the women in charge of our Hospitals Diabetic classes. My friend got as much free information for me as possible, and I read it all and learned a lot. Learned that some of the things I was asking the doctor’s about were sings of diabetes that they never caught. Wonder why I didn’t just get refered for the classes, they are 1600.00 and my insurance won’t pay for any of it.

Finally got in to see my regular doctor, he was a little better. Explained a few things gave me a perscription for Metformin and a meter. I went to the Pharmacy to get my Meter which was covered by insurance but the strips aren’t. Was totaly confussed about meters and how to choose. The Pharmicist chose for me according to what my insurance would cover and told me to go home and read it and I would be a pro in no time. Okay, thanks.

I know the Insurance Companies cause a lot of our health care problems, I know people are over worked, but there are those of us who will look for help everywhere we can to control our disease and stay as healthy as we can. It’s not like we can give up food. It’s something we have to have to live and face it several times a day. So don’t think we don’t want to take care of ourselves, maybe we get overwhelmed by the lack of help and just don’t know what to do anymore.In the 9 months that I’ve been trying to take charge of my health I have found some good products in the store that could help me along, let’s call them diabetic friendly food that made it easy to make a good choice when I didn’t have time to plan it all out. Just recently for some reason my local stores stopped carrying them. If there are so many diabetics out there why are there no choices for us? My doctor seems to only be as good as my queations. If I ask I find out otherwise I’m not told anything I may need to know. Thanks to the B-12 artical, my doctor, who didn’t know what I was refering to, wrote an order to test it the next time I get my A1c and for good measure decided to do full blood count and bloodwork. He’s good if I know how to ask and what to ask.Those are just some of the things that make it hard for us to take control of our disease.

lassengrl

Oh my god! I so agree and I am mad as hell too. My 20 year old daughter was just told she has diabetes, she thinks diaetes 2 and sent us out with a perscription and told us to go to the internet for help on menue ideas. We are lost.She said no carbs. untill we get her blood sugar down.

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